Number of British Columbians with dementia is 70,000 and rising

Erika Achterholt kisses her husband August at the Czorny Alzheimer's Centre in Surrey. August has Alzheimer's disease.Photo by
Arlen Redekop

August Achterholt liked to talk.

The father of four’s tendency to trap listeners with long, rambling stories was a bit of a family joke. But in the last few years it has stopped being funny.

Achterholt began forgetting more things, eventually referring to his family by their occupations, not their names. He started speaking more in his native German. He suffered depression. He ultimately needed 24-hour care in his Surrey home, which his wife of 55 years, Erika, who is 79, struggled to provide before she had a stroke earlier this year.

Now, the 83-year-old doesn’t talk much at all, but sleeps in a wheelchair at the Czorny Alzheimer’s Centre, while his wife holds his hand and his daughter, Monica Brabander, tells his story.

“I just have one word to describe Alzheimer’s, and that’s ‘brutal,’” Brabander said. “Slowly, he just got really confused and angry. That was really hard.”

Eventually, she said, “dad couldn’t be left alone. I know that mom probably hid a lot from us because she didn’t want to lose him. But then the bottom fell out of everything when mom had a stroke. We took care of him and we don’t know how she did it. We absolutely do not know how she did it.”

According to the report, in 2008, there were 103,700 new cases of Alzheimer’s or dementia diagnoses among Canadians 65 and older, a new case every five minutes. But by 2038, the report estimates, that figure will more than double to 257,800 new cases each year — one every two minutes — meaning a total of 1,125,000 could be living with dementia in Canada by 2030, a full 2.8 per cent of the population.

Nationally, the direct economic burden was about $9.9 billion in 2008. That’s projected to jump to a total cost to society of $97 billion in 2038, taking into account lost productivity, social fallout and other consequences.

In B.C. alone, there are now 70,000 people with dementia, and that number will rise as our seniors age. Are we ready for this dementia tsunami?

“It’s going to overwhelm us,” Blake said. “If we think we have budget problems now, my God, this is going to be huge, not just for Canada, but the global costs. It’s not just the financial cost, but the social costs. We are going to see an incredible impact on families, and a ripple effect on the whole society,” Blake said.

In terms of financial impact, if dementia were a country, Blake explained, it would be the world’s 18th largest. If it were a company, it would overshadow even Wal-Mart. As it stands, Alzheimer’s is “the second-most-feared disease in the world behind cancer.”

What Blake calls “a heartbreaking illness,” touches people from all walks of life. Her own mother, for example, is showing signs of dementia in her early 90s and a friend’s husband has been exhibiting signs of dementia though he’s not even at retirement age.

“The younger generation who see it in their families, they do not want to get it. But we are seeing a cohort of people younger and younger with dementia and that is frightening because we don’t know why,” she said, adding that the stigma still attached to the disease can make discussing it difficult.

But that is what has to be done on a policy level, she said, to avoid a crisis in health care.

“We have some time, we have some best practices, but Canada needs to put a national strategy in place so we can plan for dementia,” she said.

Alzheimer’s is a specific form of dementia, and the most common such brain disease. It is a progressive degeneration of brain cells that causes a decline in cognitive ability, loss of memory, and mood and emotional disorders. Doctors use a global deterioration scale to measure the seven stages of the disease, from no or mild memory lapses to late-stage Alzheimer’s, where patients have severe cognitive impairment and memory loss, limited vocabulary and lose the ability to move, eat or use the bathroom independently, needing 24-hour care.

It was named for German psychiatrist Dr. Alois Alzheimer, who identified it in 1906. The disease is not a normal part of brain aging, but causes protein plaques and fibrous tangles in the brain, making it difficult for nerve cells to communicate with each other.

The plaques and tangles in the brain are thought to be a result of oxidative stress, which has a toxic effect on cells in the body and brain. In Alzheimer’s, once a certain threshold is reached, the body can no longer metabolize and remove materials that then build up in the brain and interfere with nerve cells and therefore brain function.

The disease is ultimately fatal within seven to 10 years as the body is weakened by inactivity and muscle-wasting, and low immune response leaves people open to infections such as pneumonia. There is currently no cure, but while its progress can’t be reversed, some drug treatments, such as the use of cholinesterase inhibitors, have been shown to slow the rate of decline.

Risk factors include high blood pressure, high cholesterol levels and diabetes. Poor diets high in saturated fats that can lead to clogged arteries and strokes are also a problem. Head injuries can play a role, as can depression and obesity. Smokers are also more likely to develop dementia.

But genetics also play a role. Having a parent or sibling with Alzheimer’s increases your risk two to three times. A form of Alzheimer’s called familial Alzheimer’s disease, which accounts for up to seven per cent of Alzheimer’s cases, occurs at an earlier age.

And a primary, unavoidable risk factor is simply age. The number of Canadians aged 60 and older with Alzheimer’s in 2008 was seven per cent. But by age 90, 49 per cent of Canadians had Alzheimer’s.

“Our clinic population has changed compared to 10 or 20 years ago. We are seeing more younger people with anxiety about memory loss and worries about dementia, likely because of a greater public awareness, more information in the popular press and also the fact that baby boomers are a bit more proactive and want to explore their symptoms,” said Dr. Foti, who is also an assistant clinical professor in the university’s department of medicine specializing in the cognitive and behavioural problems of dementia.

His clinic can make early diagnoses using tools such as spinal fluid taps to check for telltale proteins and MRIs to check brain atrophy and shrinkage, and the clinic is working on some online tests to help check memory loss remotely and streamline their growing caseload.

And while most of these concerned patients don’t have clinical dementia, he has found true cases of dementia in patients as young as 39. And science can’t explain why they get it. Some patients can have multiple amyloid beta plaques and never develop the disease; others have few plaques, but full-blown dementia.

“Most people with Alzheimer’s under age 50, a big chunk of those have family histories of Alzheimer’s. But I see a lot of people in their 50s and early 60s with no family histories, who are healthy and they really have no reason to get it. That’s one of the mysteries. In the end, We really don’t know what causes Alzheimer’s.”

UBC scientist James McLarnon, a professor in the Department of Anesthesiology, Pharmacology and Therapeutics, has been working in his lab trying to unravel the mystery of dementia. He’s been researching possible causes of Alzheimer’s, focusing on the role of chronic inflammation in the brain and how it is potentially increased by the growth of blood vessels which in turn affect microglia, immune-responding cells in the brain.

His research is showing that amyloid beta protein plaques in the brain that are associated with Alzheimer’s may be triggering inflammation, which in turn damages the neurons and leads to cognitive and memory dysfunction. At the same time, the disease seems to disrupt and reduce blood flow to the brain, and to compensate, the brain may try to grow new vessels which in turn can leak and make the inflammation worse.

He admits that despite promising research, in his field a cure, let alone an exact understanding of the neuro-biological causes of dementia, is a long way off. He’d like to see more research into stem cells or the use of anti-angiogenic [blood-vessel-reducing] drugs in treating the disease.

“I’m fairly pessimistic in terms of what is happening in Alzheimer’s research. There is not a lot happening now that is leading to any hope of clinically proven drug therapies,” he said. “There is no magic bullet or smoking gun coming along right now.”

What’s needed, he says, is more funding for research to unlock the secret of dementia, and more novel approaches.

“Unless you do experimental work on it, you’ll never be able to resolve it.”

While scientists work on new research and the quest for a cure, in the meantime our health-care system will have to adapt to the demands of the disease.

Neena Chappell, professor of sociology at the Centre on Aging who holds a Canada Research Chair in social gerontology, says that health policy and practice will need more funding and an organizational overhaul to cope with the coming wave of dementia patients.

“The health-care system right now isn’t ready for an aging society. We are still very oriented toward a system that was devised to get rid of acute disease in younger generations. In old age, most suffer from chronic conditions, so we’re barking up the wrong tree here,” said Chappell, who has studied how people with dementia fare in long-term care.

What are really needed, says Chappell, the president of the Canadian Association of Gerontology, are more long-term care facilities as well as community-based seniors programs.

Over the next 30 years, the Rising Tide report predicts that the potential cost of long-term care for patients will increase more than tenfold.

The report predicts the number of long-term beds for dementia sufferers will increase from about 280,000 in 2008 to 690,000 in 2038, but that will still leave the system about 157,000 beds short.

“Our nursing homes now are too understaffed to provide the type of care that is required for people with dementia. Yet even now, nursing homes in B.C. and Canada are being filled with people with dementia, some entirely filled,” Chappell said.

Chappell says staff need to be trained in person-centred care where caregivers know patients’ biographies and foster emotional ties, touch and warmth and talk, even if the patient can’t fully understand or respond.

“It can still be meaningful to interact with others, to sit with them and talk, whether it makes sense or not, and to have touch and warmth,” Chappell said. “The essence of a person is still there.”

Simon Fraser University professor emeritus Gloria Gutman of the university’s Gerontology Research Centre says to get to that point, training of eldercare staff and medical professionals in all aspects of dementia care is crucial.

“Long-term care staff need to understand that this is not a disease where you can reason with people [in the later stages]. There are behaviours that can go along with the disease and acting out where the person is confused and not looking to do them any harm, but things can appear threatening as the disease affects your ability to interpret your environment,” Gutman said.

Even with trained staff, she added, “a lot of the facilities are so short-staffed just keeping people clean and dry that they don’t have the time to engage in the kind of person-centered care that is the hallmark of good patient care.”

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